Living in Limbo - Life with No Diagnosis

Living in Limbo – Life with No Diagnosis

I really do hate the school run because it means interacting with people. When I come home I am actually drained to the point where I have to sleep. I have even started taking antidepressants and fighting off the need to recuperate until the afternoon. But it is no good I can only reset myself with sleep. Then I have to do the school run again. I was put on these tablets fourteen months previously when I went to ask the doctors about a referral for seeing whether I have Asperger’s Syndrome. He told me it didn’t matter and that I could tell people I have if I liked – and wrote out the prescription. Ever since I have just been taking the tablets and paying for repeats. But still nothing is easier.Living in Limbo - Life with No Diagnosis

This morning on the school run a random man who works for the council called me a bully. I asked him what he meant and he laughed and said I had stolen my son’s scooter. I told him it was mine. My son was on his own scooter and mine (adult size too) has flowers on. I don’t get it – was he trying to tell a joke? People always have to comment on my scooter – there’s always something. But it isn’t just my scooter – it’s my clothes and other things too. I get hot really easily and hate to overheat. I was wearing shorts the other day when the sky was grey but it was still really warm. Again always said in this “jokey” way was whether my weather app was wrong! I am sure it was a joke but I can’t help it I just feel the need to explain that I get hot and can’t cope.

The doctor said that it was unlikely I was on the spectrum because I was aware that people treat me this way. That I want to fit in. He said I just haven’t had the right role models – teaching me how I am meant to behave in certain situations. But I thought that social skills were meant to come naturally? He said I could make a list. But I have no energy all the time. Surely someone should just be able to assess me and see. Why does it always have to be proven? I have begun to accept myself whether I have or haven’t got Asperger’s. Explaining to people that I don’t always say the right thing, or do the wrong thing or even get what is expected of me. It is up to them how they behave back towards me then. I do not know what more I can do.

7 thoughts on “Living in Limbo – Life with No Diagnosis

  1. I read somewhere that women with Asperger’s were different because they knew more about their condition and were able to adapt to circumstances. It doesn’t actually mean that you are not on the spectrum just because you know how to do this. My son knows he is autistic and sometimes I honestly have difficulty believing it, but then at other times it’s blatantly obvious. I’m sorry this is making you feel so low, I could tell you to forget about what other’s think, but I know it’s not easy. Just carry on being yourself and people will accept you or not, if they don’t then it’s their loss not yours xx

  2. Gosh what a difficult situation for you. Such a shame that the healthcare professionals can’t be more professional about dealing with this. Perhaps if you see somebody else you could get a second opinion? I’m sorry it makes you feel rubbish and I do hope you manage to get some help.

  3. This is such a shame, yet something that woman on the spectrum face all too often. I was constantly fobbed off by those around me until my diagnosis, telling me I couldn’t possibly be autistic. It’s a lot easier to brand someone with a mental illness and try to treat them for this than to admit that there’s something different about them developmentally. Doctors, especially GP’s, seem to know very little about ASC/D in general, without knowing what difference a diagnosis can make. I find life frustrating with being ignored for my disability at times, but I have a diagnosis. I can’t imagine how hard life would be without it.

    1. Thank you – this makes me feel like it would be in my best interests to make a list of reasons where I can tick boxes iykwim and then go back. I’m sorry to hear of your struggles even with a diagnosis

  4. Your GP is wrong, I have always been aware that I am different and getting it wrong, I just couldn’t do anything about it. And as you know I have a very definite diagnosis. I’m sorry you weren’t listened to and referred, that’s just not good enough. If you possibly can go back, armed with info about women on the spectrum and insist on a referral.
    In the meantime I’m always happy to talk things through if it’s helpful. Sending love.

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